Friday, July 20, 2012

So if you see a trend, I'm going to try and post once a month and hope that's good for everyone, unless there's just a ton going on that I feel like you might want to know about. I've been slammed with work and SMA stuff (details below) as well as other daily tasks that never seem to get completed so once a month works out well!

One of the big things I was working on was a surprise party for Kyle! His birthday was on Wednesday, the 18th and I really wanted to have a small party for him since my last surprise party for him was 5 years ago :) Crazy how time flies...

I had planned a nice picnic potluck party at the park and all day it was sunny and nice. Of course, an hour before the party, a huge storm moves in and crazy lightning is shooting out of the super dark storm clouds. Rain followed shortly after - or rather a massive downpour - and I was left scrambling for a back-up place.

Our church saved the day! They have been so freaking amazing. I'm seriously still in awe that our church is so awesome. I ran in at 5pm because no one was answering their phones and ran into our pastor and a few others. They checked the calendar and the church was open that evening so they gave me the key and let us set everything up in the cafe.

While friends and family were setting up and helping out, I came home to get ready and pick up Kyle. I blind-folded him and put him in the car. Had I been thinking, and if it were safe, I would've have him sit backwards because he's so stinking brilliant when it comes to directions. Even double blind-folded, he would say, "Speed bump... NOW!" as we would go over the speed bump. As we passed a korean taco place he said "Mmmm - sesame fries." It was ridiculous and impressive.

So we pulled up to the church and Kyle's dad had already grilled some burgers on a portable charcoal grill. As we walked up, Kyle said, "Is our church on fire?" knowing exactly where we were... Anyway, we walked inside and as he took off his blindfold, everyone yelled "SURPRISE" and it was awesome! Kyle even commented how amazed he was that the room was so quiet when he walked in.

Photo compliments of Joseph and his iPone from the church window :) It was a great night full of good food, good friends and great conversation. Kyle doesn't really like surprises where he's the center of attention, so I tried to keep the party small. He enjoyed it.

So next month is SMA Awareness month and we're excited to have a lot of different events coming up! I will be speaking at several dinner events with doctors and other medical professionals partnering with Quest diagnostics to stress the importance of SMA testing. I will be advocating for SMA testing to be done with the other testing when the baby is first born (the heel prick in the first days of life) or for parents planning on getting pregnant as opposed to testing in the womb. I'm looking forward to the dinners and will let you know how they go.

Last month, the SMA fundraiser at Sips N Strokes was cancelled randomly but is re-scheduled for next month hopefully to join several other events during SMA Awareness month. More details to come soon.

Also, there will be an SMA fundraiser for the Braves game on August 18th - "SMA Day with the Atlanta Braves" To buy tickets or learn more, please visit the GA Chapter Events Page

Next month is also the anniversary of Skylar's passing and it's so hard for me to believe it's already been one year without my sweet girl. Sometimes it feels like yesterday and other times I feel like it's been 60 years and I'm a little old lady. The good news is that I was able to book a job to photograph a wedding in the Bahamas at the end of August and we leave on my birthday so it gives us something to look forward to!

About Me

I love life. Even when it's not always great, it's better than not having it.

I started this blog as "expecting the unexpected" and didn't even know what was ahead! I was surprised with a pregnancy, delivered a beautiful little girl in Nov. 2009, and was later surprised with a diagnosis of SMA (spinal muscular atrophy) type 1. The Night Shift post in March 2010 is where the SMA journey begins... Our sweet girl went to Heaven on August 16, 2011 and is where Skylar's journey ends; however, ours carries on.